Nulla venenatis, tortor in rutrum facilisis, purus quam bibendum eros, id fermentum lacus mauris quis ante. Duis tempor vehicula eros, vitae suscipit tortor elementum ut. Praesent magna enim, pharetra quis augue sed, pharetra sodales ante. Sed id pretium sapien. Quisque tristique tellus non neque commodo,
"*" indicates required fields
file not found: /var/www/vhosts/pda.org.au/httpdocs/wp-content/themes/pda/src/modules/form-steps/main.php
On this International Women’s day, not only do we celebrate women’s achievement and raise awareness, but specifically in 2021 we are challenged to take action for equality. International Women’s Day (IWD) is being celebrated on March 8th 2021 with the theme #ChooseToChallenge.
I am a proud physically disabled female, and I choose to challenge gender bias and inequality. What do you choose to challenge this year?
Many that know me will know my motto in life is don’t judge me by my disability but give me an opportunity to show you my ability. I think same could be said should we switch the word disability with gender. Don’t judge me for being a female, but give me an opportunity to show you my ability. Either of these phrases are relevant due to gender bias and inequality that women and people with a disability fight for every day.
IWD is a day that celebrates women’s achievements and increasing visibility while calling out inequality. This day is celebrated every year similar to International Day of People with Disability (IDofPWD)where we celebrate people with a disabilities achievements and increased visibility while calling out inequality of those with a disability. I am a firm believer that both of these days deserve separate celebration where it provides again an opportunity to call out inequality globally and show that it still exists all over the word.
What would happen if we removed gender or disability from part of the equation? Could we ever get to a point where not only women, but those with a disability are included in all places where decisions are being made, not just being made for us? With continued unity, strong voices to stand for equality, it is not impossible.
We will continue to reflect and celebrate these days internationally for many years to come as we are nowhere near a society that fully sees past gender, disability, race and or religion. I am happy to believe, because of the celebration of IWD & IDofPWD we see the world starting to move forward and becoming more inclusive and equal. We certainly are not there yet however we are starting to see pay equality in most areas, more inclusive workplaces for people to thrive in, celebration of women alongside men in all areas and positively the list goes on.
Individually we can choose to challenge and call out bias and inequality. Individually we can all choose to seek out and celebrate individuals achievements. Collectively, we can all help create an inclusive world.
Boundaries.
It’s a bit of a buzzword isn’t it?
I remember hearing it from my psych. She said to me “Elle, you have no boundaries. This is why you feel the way you do. Let’s fix that.”
Even though I’d been an athlete for so long, boundaries had never really played a huge part in the lead-up and recovery from training or any major event, or so I thought. If I think back now, I probably was doing my fair share of it, but it all related back to swimming so it was never a holistic approach.
During the 13 years I was on the Australian team, I had colds, my nose was always running, I had dry skin and aches all over from pushing my body to the limit. But now, I’ve learnt to be a LOT more balanced in my ‘pushing’ with daily self-care practices in place so that I can at the very least get up the next day. For me, self-care and boundaries go hand in hand. I want to share some self-care tips with you for the end of year holidays.
Now, go and do what makes you feel good over the holidays.
If someone was to ask me about my understanding of bullying, a few weeks ago I would have reflected on the time I bullied our workshop apprentice whilst the older men around us cheered and berated the poor guy. Thank you for refusing to put up with my misguided anger Scooter, you were stronger than me at that time.
I may have also reflected on my children’s experience halfway through high school. They were ostracised from their group of friends due to the boredom of a couple of kids and the belief of their parents that, if my children put up with it, it would resolve itself.
The last place I expected to be bullied though was in an Australian public hospital.
I best include a little information about myself so you can better understand the situation I have found myself in. I am in my early 40s and have been a high-level quadriplegic for the past 20 years. I have a severe pressure wound that has had me restricted to bed for the last eight months or so, 24/7. The chronic pain I have suffered since I got my disability has proven to be one of the biggest hurdles I’ve had to overcome. For the past eight months I have been experiencing bouts of a condition known as autonomic hyper dysreflexia – a potentially life-threatening medical emergency suffered by a small amount of spinal-cord injured people with symptoms that include high blood pressure, pounding headache, flushed face, sweating above the level of injury, goose flesh below the level of injury, nasal stuffiness, nausea, tachycardia and high blood pressure. I also had a soul crushing migraine that would make me wish that I was dead.
One of the unfortunate facts about autonomic hyper dysreflexia is that it is misunderstood and practitioners do not typically have any knowledge of how to deal with it. For example, every time I was admitted into hospital I had five ward doctors standing around me uncertain as to what to do to relieve the situation.
It had been decided by my nursing network and a number of health professionals who had been reviewing my wound progression in my home, that I must attend a hospital emergency department due to the high possibility that I may suffer an uncontrollable attack of this condition and die. I had my support worker pack a bag for me and I called an ambulance during the early evening.
As I was waiting to be processed and assigned to an appropriate ward so that I could receive appropriate treatment from a physician with some expertise in my illness, I was approach by an irate doctor swinging her arms around in an aggressive manner, trying her best to intimidate me and make me go home.
She made it quite clear that I would not be getting any treatment on my wound through the hospital. She continued by asking me what I expected the hospital to do about my situation, to which I replied “I don’t know what you can do for me, I just know something needs to be done because I am not safe at home and I believe the hospital is the only place for me to be where an appropriate plan of action could be made.”
Unfortunately, as I have learnt over a 20 year period dealing with the public hospital system, this sort of response is not uncommon. The chronic health concerns of people with disability are deemed too hard to deal with and this is somehow my fault.
At that point I had to do what is the only course of action available to resist this form of bullying and intimidation: stand my ground. I refused to just go home and asserted my right to receive treatment for a life-threatening injury which eventually resulted in my being admitted to have my condition stabilised and assessed. I still have a way to go and I anticipate further battles to get my needs met.
I understand that hospital emergency departments are stressful places and that the Coronavirus pandemic has only increased the pressure felt by the people who work there. But this does not justify the mistreatment of people with needs that are different to the patients they typically deal with and we must not accept it.
Once upon a time there was a guy who was a left below knee amputee.
In January 2019, he applied for, and was given access to the NDIS as a participant. He was very excited about this because he and others had lobbied hard for this Scheme.
In his first plan, built by an NDIA Planner who knew nothing about amputees, he was given ample Capital Support Funding to provide a complete rebuild of his everyday prosthesis, a brand new, complete fully water proof prosthesis and a very expensive custom wheelchair, complete with a set of off-road wheels and a free wheel device for him to use when he goes camping, which is one of his big goals.
He was given Capacity Building funds to employ an OT to do a full Functional Capacity Assessment. He went through this process and it was identified he needed to get a wheelchair and the new prosthetic limbs, among other things AT.
It was identified that in the next plan Home Modifications Capital Support funding should be asked for and granted as reasonable and necessary. The OT did all that was required of her with regards to documentation, photos and justifications for the next plan.
To say he was happy, is an understatement. He is working in the disability industry, is a passionate advocate and activist and a leader in the Amputee community. He knows the NDIS is very good for his community and continues, despite its flaws and failings, to promote it and extol its virtues.
In January 2020 he had a plan review asking for the Home Modification process to be started and asked for funds to start the process as was identified in the FCA completed in 2019.
The plan was sent to the Delegate for approval at the end of January 2020. The plan was approved and arrived in his My Gov account on the 19 January 2020 and he sent it straight back for S100 review due to the omission of the asked for Home Modification Capital Supports.
In April 2020 he received an outcome of the S100 review stating, amongst other things, “I am not satisfied that there is sufficient evidence at this time to make a determination as to whether the requested support represents value for money” and “I have assessed this support against each of the criteria in section 34 of the NDIS Act, and I am not satisfied that your request is reasonable and necessary.” This is his personal favourite,” “I am not satisfied that there is sufficient evidence at this time to make a determination as to whether the requested support is effective and beneficial.” To date, he is still fighting with the Agency to get the Home Modifications completed.
The One-Legged Sax Player is a nice guy. He works hard, He is a husband, a father, a colleague, a friend, a confidant, a board member, a speaker, a teacher, an advocate and an activist. He is well regarded in his community and works his butt off for them with little or no reward.
He has paid taxes since he was 15 years old and has served his country in the Royal Australian Navy, so it begs the question, on what planet does a ramp covering 4 steps and making accessing his house in a wheelchair, not reasonable, necessary, effective or beneficial?
My name is Sharon Boyce and I am on the Board of Physical Disability Australia. I am also an author, educator and disability advocate – wearing many different hats and performing many different roles that I never imagined I would be a part of. I am the Advisor to the Queensland Disability Minister and Chair of the Queensland Disability Advisory Council. I am also a part time education academic at University of Southern Queensland (USQ) completing my PhD and a consultant in disability awareness.
I was diagnosed with Juvenile Chronic Arthritis at 11 and have used an electric wheelchair since I was 21. When I was diagnosed I never imagined the impact and change this would bring to my life. I went from a child who never stayed still and who was on every sporting team possible to a very different world. Limited in some ways and expanded in others, but as a person living a very changed life. I had no idea about disability and did not want to acknowledge or be part of anything that was different.
That has certainly changed over time. Through my journey I have explored and discovered many areas. I have become more involved within the disability community, working across many areas to promote a true understanding of disability and diversity. I explored my hobbies of art and music and these became new passions for me, giving me a creative outlet that I had not realised was possible. I have had the chance to exhibit, sell my paintings and also just paint for fun. Music and singing has also been central to my world. I have always felt very lucky that my mum had encouraged this – taking me to music lessons and putting up with my practice since I was four years old. These skills have proved useful in my life especially my work in radio, where I got to interview singers and review movies for over ten years.
I am committed to creating a world where real lived inclusion is possible. I believe that through real hands-on education and experience, and through sharing my story and the stories of others, that barriers can be broken down and real understanding can be achieved. This is real disability awareness.
As time progressed I felt there needed to be more information and understanding about what disability is and how it impacts on individuals in our community. I developed a “Discovering Disability and Diversity” hands-on, experiential awareness programme which enables students, teachers, carers, doctors, health workers and the general public to experience and explore a wide range of disabilities. You can read more about this at www.discoveringdisability.com.au.
PhD Research into dyslexia and educational inclusion and running lectures at USQ have also given me the opportunity to enable others to explore and understand a little more about physical and hidden disabilities, dyslexia and creating inclusive curriculum, pedagogy and workplace support. Through educating others to understand that not all disabilities are immediately obvious, I believe that society will be discouraged from making assumptions and drawing inaccurate conclusions.
I have written a number of books, recently launching “Discovering Dyslexia” with the Queensland Disability and Education ministers. I have also designed an educational resource kit called “Another Day in the life of Sharon Boyce”,written a children’s book called “Discovery at Paradise Island” which is now part of the NSW School Syllabus.
These experiences and opportunities have brought a richness to my life. I am committed to creating a world where real lived inclusion is possible. I believe that through real hands-on education, experience and through telling my story and the stories of others, barriers can be broken down and real understanding can be achieved. Enabling better understanding and empathy that initiates conversation about disability access and inclusion, ultimately working to breakdown barriers.
Born with no disability, I never would have believed this would be my life now and that creating an understanding of disability and sharing my story would be central to who I am. My own acceptance and acknowledgement was key to this.
I believe that together we can create inclusive communities through enabling us all to live our best lives.
by Nina Crumpton – PDA Associate Director (NSW)
As someone living with Primary Progressive MS and Bronchiectasis, (lung disease), I am someone who could very well be classified as High Risk were I to contract this infection. This fact has caused me to consider what that could really mean for me over the course of the weeks and months to come.
I could die. That is the harsh reality, my reality. That thought alone could be enough to induce fear and paralyzing anxiety in me. I have read media reports that if it came down to a choice between my life and that of an able bodied person in ICU, I may draw the short straw and lose the lottery of life which is a terrifying prospect.
Knowing this, I have chosen to regulate my emotions and remain calm and rational and to employ logic not fear. I have chosen to plan and prepare as best I can for any eventuality that may arise. I have also chosen to only control the things I can and to let the rest go.
As the saying goes, “Stay Calm and Carry On!!
I am indeed fortunate in many ways. I have secure employment in a job I love and I am able to now work from home. I have a secure home and a good support system. I have no personal/household debt which is very comforting in these challenging times.
The NDIS has allowed me to have the supports I need to live an ordinary life and I wouldn’t be who I am without that framework around me. It has given me the ability to work, study, access the community and travel. My life has opened up in so many amazing ways so when the pandemic hit, I made a conscious decision not to reduce supports but to modify the delivery of the supports in a way that would still support my mental and physical health.
I am now only leaving the house to exercise and for essential medical appointments really. I choose to minimise my risk of infection in this way and to be honest, I am really enjoying the quieter pace of life. I am reading books, taking my dogs on leisurely walks and napping every day. I have no hurry to rejoin the rat race of life and I am actively questioning if that is even necessary at all.
Is this a fundamental shift in the way we live or a temporary pause before we once again are infected with the disease of busyness?
Stay safe, wash your hands and be kind xx
Written by Kathryn Lyons, PDA Associate Director
Throughout our lives we all experience highs and lows. We can feel trapped in our minds, bodies and spaces. Sometimes we choose an alternate reality to escape from what is happening in the world around us. Having personally experienced this, let me share a part of my journey.
I was born with a progressive and degenerative disability that impacted on my life in multiple ways. Initially, I was able to walk and physically capable of many things, as puberty hit my body changed so drastically; I ended up in a wheelchair. Learning to live with the complexities caused by the physical side of my disability became a new challenge.
This was a major life changing moment for me. For example, 12 years ago I could figure skate. Two years later, my body deteriorated to a level where I became bedbound, unable to transfer or care for myself independently.
I couldn’t understand WHY this was happening to me. Why, I had such intense pain. I was confused. I quickly went from a happy teen who would smile and talk to people into someone who felt trapped. Not only within my body, but isolated within the four walls of my room.
My confidence had decreased. I didn’t know who to turn to. Feeling like my whole world had crumbled around me, I started developing depression and I needed to find a way to distract myself quickly.
So, I got a computer and started living in virtual worlds, by joining alternate universes. I would game with them from across the globe on mass multi-player online games, instead of physically being around people. This online existence meant I could do anything, and it opened doors within my mind. It started to simulate the feelings of walking, dancing, and even figure-skating again. I had no restrictions and it was amazing! I could travel anywhere and in any time. I was losing my sense of reality.
For 7 years, I lived in these new worlds thinking I was happy, only really emerging when it was necessary. Over a period of time I started to realise that this was not healthy. I had to come to terms with the way my body had changed. Needing to grow mentally, this altered my perspective and reshaped my attitude around disability. My first steps were to accept myself and the freedom I could gain from my wheelchair. To achieve this, I had to leave my virtual life behind, by coming out of the shadows I opened my arms and embraced everything, rediscovering the amazing world that I was so afraid of.
Over the past 3 years, as I have built up my confidence, I have also been learning how to be a disability advocate supporting diversity and inclusion. Developing communication skills around public speaking and networking, I have strengthened my connections and now I’m building my businesses.
Through my networks, I was introduced to a representative of Physical Disabilities Australia (PDA). Joining PDA, gave me opportunities to meet with other members, where I learnt about their stories.
With PDA, I’ve realized I’m not alone. Discovering I could still do so many things, like race, dance, shop, socialize, work and travel. I was preventing myself from having an incredible life. Now with the roll-out of the NDIS, I aim to expand this and live to the fullest.
Every person has their own unique story and although we go through different journeys, we have something in common.
If you want to read more blogs like this one or find out what PDA does, please check out this website, follow them on Facebook, Instagram, LinkedIn and Twitter.
Start to connect, as you will never know what you will find.
Written by Jonathan Shar, PDA Director
While the National Disability Insurance Scheme takes account of our care and support requirements, in my view the policy doesn’t go far enough to tackle the marginalisation and discrimination that people with disabilities face.
If cases like *Quaden Bayles has taught us nothing, Australia has a problem with our attitudes and perceptions of people with disabilities. In my life, I walk with an unusual and stare provoking gait. I have a speech impairment. Despite that I run my own business and sit on a board but the general public don’t see that side of me.
I share this not for your pity or condolences but for context. Like you I’ve faced adversity in my life. For me I can’t hide my disability, instead I celebrate my distinctive abilities. It is not the fact that I can’t run that is my disability but the taxi driver that refuses my fare because I am “unaccompanied”
There has been calls to integrate disability awareness into the school curriculum but we need to go much further because I don’t want to be trapped in a dichotomy between a welfare recipient and Paralympic champion, I want the tools to live an ordinary life without the social judgement of people who has no idea about disabilities.
For me, a ramp is a small part of what it means to be an accessible society. An accessible society would be one where I could say “This is me, disability is my identity”, it would be a society where children would be educated to ask first, stare never.
For this we need a shift in policy, we need to treat disability discrimination as something to be prevented by education not having to be referred to a complaint authority. Disability awareness in my view should be a component of study in high school PDHPE courses. Making disabilities part of normal life should be instilled from people from a young age.
On top of this we need campaigns focusing on everyday people with disabilities not just those with a public profile or cute kids who can illicit the most donations, a campaign not of inspiration porn but people that we can aspire to. We need more people like Nas Campanella being the public face which makes disability normal.
A good attitude may not erase a disability but it can make disability more included in our society.
* https://mobile.abc.net.au/news/2020-02-24/quaden-bayles-not-alone-disability-royal-commission-finds/11994872?pfmredir=sm
1800 732 674
